The other day, while going about my daily activities, I happened to have my iPod on. And on said iPod a song from probably my favorite musician (Bruce Springsteen) came on. The title? “Tougher Than the Rest.”
As the song went on, it started me thinking about concussion, as that also happened to be on my mind. (See? I’m always thinking about you guys.) All the comments on my blog, all the work yet to be done, everything that’s happening … it’s all been on my mind. (To clarify, however, the song as written, has nothing to do with concussion. It’s a love song, but the title is applicable to concussion recovery, I think.)
Anyhoo, it’s very difficult to deal with a concussion long-term. It is not understood at all. There’s really not much information or treatment available for it. All this extra attention and focus has just been occurring in the past year or two. Anyone going through a recovery has an incredible amount of adversity with which to contend.
What you have is an often-debilitating medical issue that:
- Is impossible to see
- Doesn’t show up on tests
- Can take a long while from which to recover
- Is misunderstood and misinterpreted
- Is put back upon the patient when nothing is found on tests
- Manifests via different symptoms, and not everyone has exactly the same ones
- Without many known treatment options
In short, it’s a mystery illness. At any given time, though, these are just some of the symptoms that people may experience:
- Non-stop headaches
- Debilitating concussion fatigue requiring much rest and sleep
- Balance difficulties
- Diminished ability to concentrate
- Sensitivity to light and noise
- Inability to drive
- Memory difficulties
- Difficulty sleeping
On top of that, concussees have to deal with these types of issues:
- Disbelief by those in many aspects of their lives
- Accusations that they’re making it up
- Character attacks
- Loss of income
- Loss of independence
- Loss of family interaction
- Changes to their careers
- Difficulties meeting work and school requirements
- Missing activities and social events
Medical personnel, coworkers, school personnel, friends, family – it’s not unusual for them to not believe a person with a concussion that lingers. For one reason, I think it’s because it’s stated in most places that they resolve quickly, as in within days or weeks.
Well, guess what? Sometimes they take longer.
The world doesn’t completely realize that yet, but it’s starting to come out. In the meantime, for anyone going through it, keep this in mind: you’re tough. You’re tough because it’s about the only medical issue I know of with so many unknowns. It’s the only one with which I’m aware that is put back upon the concussee as their problem, that they’re making it up or making it happen. You’re tough because even with all of that, you’re somehow dealing with recovering from the concussion as well as all these other factors. Noone should have to do all that. Someday, perhaps it will get to the point where you only have to focus on recovery. Until that time, though, you have to be … tough.
For the record, too, I’d like to say that even though I’m pretty much through my concussion recovery journey, my intent to continue advocacy work is not diminished. For I, too, am tough. I made it through all that. I’m prepared to do what I can to get the word out. I am prepared to share what it’s like whenever and however I can, to get the word out and hopefully, hopefully, get some awareness of PCS. So focus on your recovery, and I’ll fight on your behalf as best I can.
In the meantime, I made something for you, or for someone you know going through a concussion recovery. It occurred to me one day that people going through this deserve a medal. I can’t pass any out, but I made a certificate, an award. Feel free to print it and give it to someone you know, or print it out for yourself. Just remember that I believe you, and I’m workin’ on it. So hang in there!
Medical staff and researchers: please keep working on this. Everyone even remotely connected to concussion advocacy, research, or treatment needs to try and step up efforts – myself included. In the meantime, all those out there will keep pulling themselves together, and against all the odds stacked against and directed toward them – they’ll march on, determined to get to the end of their recovery journey. They’ll fight the concussion every day. They’ll fight everything else that is part of it. They’ll keep going.
And if you’re a doctor or medical provider and someone with a long-term concussion shows up in your office, don’t dismiss their concerns just because their concussion is extending longer than a few weeks or months. Please give them the respect they deserve.
They’re tougher than you’ll ever know.
(Hopefully, Mr. Springsteen won’t mind this interpretation of the song title, of the direction it led me. If so, just let me know. You might want to check out the song. If nothing else, you can enjoy some sweet harmonica playing….)